Teen/Young Adult Cancer Org Spotlighted for National Rare Disease Awareness Day
John Hopper, Executive Director of the Fibrolamellar Cancer Foundation (FCF) will be a keynote speaker on Thursday February 25 from 8:30am - 11am at the Legislative Office Building, 2nd Floor Atrium, 300 Capitol Avenue, Hartford, CT to address the state assembly, industry, medical institutions, academia, managed care organizations, as well as the general public, about the issues that patients with rare diseases face.
Hopper said, "Rare cancers represent a large percentage of all cancers, and the majority of rare diseases. Fibrolamellar is a very rare and aggressive liver cancer that attacks teens and young adults who are typically very healthy, yet rarely diagnosed until Stage IV. To date there are few curative treatments which is why sponsoring research is a priority for the foundation. We are proud to be selected as an example to bring awareness to all of the rare diseases that affect so many people."
During the event, patients, caregivers, medical professionals, industry representatives and state legislators will share their stories and support for the estimated 357,000 residents living with a rare disease in Connecticut.
The impact for patients is monumental. Additional funding for research to discover treatments can save lives. Dr. Ghassan Abou-Alfa MD, medical oncologist at Memorial Sloane Kettering Cancer Center in New York, who treats rare cancer patients, including those with fibrolamellar, said, "One of the greatest needs oncologists who directly treat rare cancer patients, is for more clinical research. Increased support from the government and private sectors needs to accelerate, as well as encouraging young research investigators to focus careers on finding rare cancer cures. This is a dire need for fibrolamellar and others that hit a small but important per cent of our population. Without such an emphasis, oncologists are limited to the treatment options that we can offer to try to save lives."
Government officials are backing the FCF's mission of building a collaborative community to support research, broaden education and build patient communities around rare disease such as Fibrolamellar. Many important decisions related to rare diseases are made at the state level, including newborn screening; support services to help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patient access to medically-necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the health care needs of Americans are addressed.
U.S. Senator Richard Blumenthal said, "Ensuring quality health care for all includes those with rare diseases. Federal research funding should include studies that can result in more effective and less costly treatments for rare diseases. Affected families deserve no less attention than those families with more common and widespread illnesses."
State Representative Fred Camillo added, "The day a parent is told their child has a rare disease such as fibrolamellar- with no cure- is the day their entire life is changed- forever. The emotional and financial stress impacts home, work, and community for these families. We, in Connecticut and beyond, need to collectively focus on ways to accelerate support, and leverage our assets to help organizations like FCF."
To hear more about Rare Disease Day here in Connecticut, tune into your local news on Thursday or attend the Hartford forum at the State Capital. Details are available at: http://www.rarediseaseday.us/events/locations/connecticut-state-house-event-location/
About Fibrolamellar Cancer Foundation:
FCF, a public 501c3 nonprofit organization based in Greenwich, CT, was founded in 2009 by 27 year-old Tucker Davis, who lost his life to the disease in 2010. The foundations mission is to:
About Rare Disease Day:
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. The goal of Rare Disease Day, organized by the National Organization for Rare Disorders (NORD)® (Danbury CT national headquarters) is to foster collaborative efforts across all stakeholders, especially government, to increase awareness, improve care support, encourage research, and advocate resources- financial and others- to address this growing population- in hopes for a healthier community.
Facts About Rare Disease:
For more information about Rare Disease Day in the U.S., go to www.RareDiseaseDay.us. For information about global activities, visit www.RareDiseaseDay.org). To search for information about rare diseases, visit NORD's website, www.RareDiseases.org
Fibrolamellar Cancer Foundation:
20 Horseneck Lane, 2nd Floor, Greenwich, CT 06830
T: 203-862-3196; www.fibrofoundation.org